Sunday, June 19, 2011

I think a lot of parents do it. All the time. The line between the parent they want to be and the parenting that they may be doing in any given moment. The line between the parent with their child's best interest at heart (hah) and the one that shows up when the bank account can't handle it/what needs to get eaten before it spoils/amount of sleep I got/could you just stop whining/move faster/put on the clothes that i already picked out/ 'just do it' parent takes precedence.
I know that I've certainly been that parent. Both of them and I relish the lifelong journey of finding a given balance to it on a given day.

But lately I've been walking a different line and I'm feeling once again that my parenting is just that little/lot bit different than the typical caregiver.

My son is going to summer camp. He's got one week between when his Special Day Class (SDC) ends and the extended school year (ESY) program through the district starts. He's also got five weeks between when the ESY ends and his SDC starts up again in the Fall. Most parents are looking in to camps for their kids. Or, their childcare is year 'round and they have nothing to worry about (except for the astronomical cost associated with having to pay other people to care for your child so you can work to pay the bills- we really dislike children and parents in this country...but that's another rant).

Simon has been at his SDC for two months now and the time away from me, with his peers, learning so much more than I could teach him, has been incredible. For both of us, these last two months have been a gift in seeing us both come a little bit more into our own. For sure I have enjoyed the break but Simon...good gravy, the boy has just been exploding with growth and joy. His favorite catchphrase of late is "I looove (fill in the blank)"; Recess, his friend Pharaoh, Speech lessons, the school bus, Scuba divers, Penguins, Sweet Pea (his horse from Therapeutic riding), and my personal favorite, Mommy and Mama. That's right, he appropriately used an 'and' in a sentence. His language, his peer interactions, his awareness...it's all just blooming like the allergens in the Bay Area air.

So with the time off now and coming up later in the summer, it seemed imperative that I find Simon some kind of comparable program for when ESY ended. And so the line walking began.
What kind of program should I look for?
What kind of program will be safe for him AND challenge him the way he is hungry for now?
What kind of program will take him?
Will they be open to tube feedings?
Will they be comfortable administering medications depending on the time of day?
Will they admit a child with a stable but critical heart condition?
Do they a program that he can keep up with cognitively as well as physically?
Will he be able to cool down if it gets too hot?
Will they have a financial aid program or at the very least be in the "we could probably make that work" price range?
Will the day be short/long enough? Not too short that he's needing more but not too long that he needs a longer feed/medication/rest.
Will they get that while he looks stable and oh so handsome, he actually is delayed with his gross motor, fine motor, and cognitive skills and needs a little extra attention?
and on and on...

Some of these questions are meta enough that any parent might ask them. I know that. I feel it. And then there are the questions that are so specific to Simon and all the things that he brings to table.
And he's 3
And he's tiny.

And by golly, if we have to spend a whole week (and then FIVE) just the two of us, gazing at each other's navels all day every day, there will be summer storms here in the bay Area.

So there I was, researching camps/daycares/programs for my child and all I could hear over and over in my head was the rich deep baritone of Johnny Cash.

I Walk the Line.

I wish I could insert an audio clip here because if you know the song then you know the resignation that his amazing voice conveys. It's the resignation that I was feeling for the last two weeks of never being able to find the right summer program for Simon and what side of the line should I lay it down. Do I stand to the side that looks like a good program but doesn't have any experience with special needs (and so I train and explain and lay the $ down knowing that there might a good chance it's not a good fit or Simon can't keep up with the program/won't get fed/ get the attention that he needs) OR do I find a program that is specifically for children with Special Needs but won't challenge Simon in the high functioning but still special needs and medically fragile way that he requires. AND where is that program that deals with my child but won't make him wait until he's 6 or 12 years old.

My sweet little man doesn't quite fit into any of those programs. Like any person bringing up a little person, I want what's best for him. What's amazing and wonderful and really fucking hard is that it's changing all the time. That's not so extraordinary. For Simon, with his developmental delays and medical issues, and love of the world around him, the trick feels like choosing what to prioritize in any given moment.
For whatever reason this moment feels higher staked than others.

It feels momentous. And I'm scared. We finally found a piecemeal plan of things for him to do and not one of them feels like a good fit. One week of indoor camp, four weeks of ESY, three more weeks of indoor camp, one week of outdoor camp, one more week of indoor camp. Lots of themes, lots of hours, lots of sun, lots of training on tube feeding, extra diaper changing for programs that only accept potty trained kids, keeping up, not being able to keep up, not being challenged, too much challenge....it's all there.

In the middle of it all are regular appointments for feeding therapy, weigh-ins, wellness,Therapeutic Riding and Physical Therapy. There is swimming to do, friends to see, and of course medications to take, and barfage to clean up. We live a full life over here.

So I'm scared. I'm scared for Simon in so many new environments. I'm scared to forget a minor or major detail in training the 6th or 60th person on how to connect and run his feeding pump. I'm scared that there doesn't exist the right program out there for him and all his many beautiful and difficult issues. I'm scared for all the new germs and places to trip and fall, and I'm scared for that new and exciting game that get's introduced that's too much for him and his stable but once very sick heart.

I'm also scared to let these fears taint or grey summertime for my son. Summer was and still is a time of great joy for me (in memory certainly but also in present). I want him to savor summer time and camps and friends and water and cold tasty treats. Yes there might be cooling vests and thinking about how to balance fluid intake with Lasix dosing, but I want Simon to make lanyard jewelery and listen for the sound of the ice cream cart and have summer romances and all that good stuff.

Either way it begins tomorrow. I drop him off for a week of Beaches and Sunshine. I will pack his pump and blenderized food and diapers and change of clothes and hope that the other kids are no more than a foot taller than him at most. I will hope and have faith that they will watch out for him just a little bit more than little Timmy or Suzy or Sage or Moonbeam (it's in Berkeley).

I will imagine Simon exploring this place and meeting these new people with the same twinkle and open smile that he has brought to just about every other moment in his life. I will wait until 12:30 and pick him up hopefully full of smiles and new names and love for summer camp. He can do it. I can do it.

I walk the line.

I keep a close watch on this heart of mine
I keep my eyes wide open all the time
I keep the ends out for the tie that binds
Because you're mine, I walk the line

I find it very, very easy to be true
I find myself alone when each day is through
Yes, I'll admit that I'm a fool for you
Because you're mine, I walk the line

As sure as night is dark and day is light
I keep you on my mind both day and night
And happiness I've known proves that it's right
Because you're mine, I walk the line

You've got a way to keep me on your side
You give me cause for love that I can't hide
For you I know I'd even try to turn the tide
Because you're mine, I walk the line

I keep a close watch on this heart of mine
I keep my eyes wide open all the time
I keep the ends out for the tie that binds
Because you're mine, I walk the line.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com